a lil' of this and that

We had a great Thanksgiving here in Houston. My mom, dad, Anna, and Kelsey came in town to celebrate at our house! It was a relaxing few days with the fam.

Luke has been doing great! He has 'slept' through the night for 10 nights in a row. (by slept I mean...some nights he still cries but I have not had to go in there once...he will cry himself back to sleep! yay for me being "mean" :)) His appetite has INCREASED since the night sleeping! This is great news for any baby, but especially for our special one! :) He has not cried ONCE while taking the bottle in the past 2 weeks! He is still spitting up a lot with quite a few 'total bottle throw-ups." We are hoping this is due to his reflux and not EB. His total ounces per day are where they should be. Now we are back considering putting off the scope again. It is still on the TCH schedule, but we are able to cancel up until the last minute. Like I have mentioned before, Luke WILL have to be scoped at some point due to his disease. The doctors need a starting point because most likely he will be scoped more than once in his lifetime. We just can not let ourselves say yes to something that could potentially make things worse for a 3 month old when he is thriving like he is. The scope procedure can be done pretty much anytime so we are thinking about waiting until he shows more signs of needing it now that he has been doing so well. We were told that Luke will need to prove himself...well...with the BIG hand from our BIG God and all of the people covering him in prayer, Luke is showing us all how strong his little self is and how much of a fighter he is! Greg and I are amazed at how much his eating has improved from just a few weeks ago. Thank you from the bottom of our hearts for the prayers.

As far has his blistering goes...they are still popping up rapidly. The pictures show the ones that are healing on his face. He also has 3 small ones on his legs and still has the usual ones on his fingers and toes. I am praying the ones on his legs do not get worse. I DO NOT want to have to mummy wrap him. It makes me sick to think about his EB getting that severe. Dressing his body will be VERY time consuming (the derm. told me it can take up to 2 hours if his body were to be covered with blisters!) The reason for the wrapping is to prevent infection and reduce pain. So far he is doing great. Nothing looks like it needs to be covered. We just keep the ointment on them and pray a lot! :)

I'm sure many of you know that all firsts are special with a new baby. This was an extra special Thanksgiving with Luke here to be a part of it. We have SO much to be thankful for.

Luke's stats and more!

We have had a busy week around here! We went in to see Dr. J. for our big 2 month appointment...with shots! He only gained 4 ounces this week, BUT, (drum roll please) Luke was in the 70% for weight!!!! Dr. J. had to re-check the stats to make sure he was right! We both could not believe it! It was so sweet...right after telling me the news, he says, "good work mom, dad, and God!" We love Dr. J. Obviously we all know that EB babies/children can fall down the growth curve at any point, but we are celebrating for now! Luke was in the 93% for height! He has really been looking long to us lately, so that did not surprise me!

We went to see our derm. Dr. B. on Wednesday. Lindsay and James Thomas had an appointment at Texas Children's too, so Luke and I headed up there early to have lunch and sit with our besties on the 14th floor before we made our way to the 8th for our appointment. Who would think I ever would be having to go to TCH with my baby let alone be there with my dear friend and hers...AT THE SAME TIME!? We serve a BIG BIG God who has plans far greater than I ever imagined.

Dr. B. was so happy to see us again and Luke was really happy to see her too. He smiled at her just about the entire time! Precious. I love his innocence. We learned some new wound care tactics that will help now that he is getting blisters on his face. We also learned about a few EB specialists across the nation that we will probably go visit in the future. I also learned that EB kids typically are smaller than others (weight) due to needing more calories and being weird eaters so Dr. B. was super impressed with him currently being in the 70%! Overall, it was a good visit. I feel so blessed to have wonderful doctors who seem to care so much about Luke.

Dr. J. gave us the okay to try to get Luke sleeping through the night. We tried it for the first time on Wednesday night...sort of. He woke up at midnight and Greg went ahead and fed him because we knew he had not eaten a lot during the day. He woke up again at 4 and I gave him a 25 minute crying allowance. He cried for 20 then went to sleep and didn't wake up until 6:45! 12-6:45 wasn't bad considering he had not had a great eating day prior. Last night (Thursday) we tried it again and he did GREAT! I fed him at 8:30 but he did not go to sleep until about 10. He woke up at 3:30 and I mentally gave him another 20 minute crying allowance...and he was back asleep in 15! He slept until 7:40!! 8:30-7:40 with no food! We'll see how tonight goes...

We will have to go back in for a weight check after doing the 'cry out' for a week to make sure he isn't dropping. Dr. J. also said to feed him in the middle of the night if he has a terrible day of eating.

Stayed tuned for another post (with pictures)...we have birthday parties this weekend, Auntie Anna and Uncle Marshal are coming in town, AND we decorated for Christmas!

EB

I finally did some more dreaded research on our precious baby's disease. www.debra.org

I HATE doing this...but it has now been 6.5 weeks since his final diagnosis and it's time I come out of denial. Everyday that has gone by I look for signs of healing...signs that he is getting better. He is not. The reality is that Luke was born with a lifelong disease. (we are not giving up on a healing miracle though) Everyday is different...some much better than others. He has been taking in more ounces over the past week which is great news, however, he is starting to spit up A LOT more formula AND mucous. (sorry gross) This "mucous" is not a good sign. We were warned about this. It could mean there are in fact strictures of some sort forming in his esophagus. :( I am almost 99.9% sure we will go through with the scoping. My gut tells me it needs to be done. I keep trying to push this feeling away making up plenty of excuses to not do it, but there have been too many signs telling us to go through with it. Maybe God is reminding us that this is His plan and we are to put ALL of our trust and care in Him for our Luke.

We went in for a weight check and he had gained 10 ounces in 13 days! Another praise! He is now a whopping 11 lbs. 15 oz. That sounds like a lot...here is what a mom of an EB baby wrote from her blog explaining weight/nutrition with an EB baby...


"And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you."

in case you are interested...her blog is www.patriceandmattwilliams.blogspot.com

Luke still has blisters forming on his chin. There have been 3 so far...the newest one is in the corner of his mouth. It's tiny though so hopefully it won't affect his eating!

Just a little update! Like Lindsay mentioned on her blog once...blogging can definitely be therapeutic. After reading so much last night, I needed to blog! Greg and I are obviously so in love with our little boy and it literally makes our hearts ACHE so badly to know this innocent life has to deal with so much. I wish I could trade places with him...honestly I do. Thanks again for the continuous prayers, letters, encouragement, and sweet notes!

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December 10.

32 days for Luke to prove he is not ready to be scoped. We are on the OR schedule at Texas Children's for Luke to be scoped December 10 at 7:30am. If he continues to eat over 20 ounces with little fussing and little spit up for the next 32 days we can postpone the procedure. Yesterday was not a good eating day as far as the ounces and spit up goes, but hey, that is only one day. Today he is doing better so far! I am so scared for our precious babay to go through this. SCARED! We will have to stay at least one night at TCH for him to be monitored. Have I mentioned before how much I loathe hospitals...especially when it is our tiny baby needing to be there.

A little more news...he has gotten another blister on his chin. I get a sick feeling in my stomach when I see these ugly reminders of his disease on his little sweet face. I am trying to change my prospective on this. Maybe these blisters need to be a reminder of the One who delicately made Luke...that Luke IS extra delicate and EXTRA special...that he is being lifted up by so many for healing possibly bringing more people to God...and mostly a reminder to be thankful he doesn't have a worse condition. He is able to smile and communicate with us and if you are a parent, we all know what one little smile can do! :) I still haven't lost hope for no more blistering on the rest of his face and mostly for complete healing!

My sweet friend Amanda Yocum sent me a wonderful devotional book. I flipped ahead to DECEMBER 10...and oh my:

"Make Me the focal point of your security. Instead of yearning for a problem-free life, rejoice that trouble can highlight your awareness of My presence. Accept the value of problems in this life, considering them pure joy..." "When your private world feels unsteady and you grip My hand for support, you are living in a conscious dependence on Me."

let's get a second opinion, Lindsay's bday, and Halloween

The weekend started out with a visit to a new GI doctor at TCH. What an experience it was! I had to go alone this time because Greg has a job to hold up :) I knew Luke had a stinky diaper when we got there, so I thought I would change it quickly before we were called back. Right when I got everything out to do the change, his name was called. I scooped everything up in my arms, including Luke and headed toward the door when I felt some nasty warmth on my arm. Oh dear. Luke had a mega blowout...the biggest one ever. It was soaked through the entire leg and back of his outfit. (which was super cute and weather appropriate) Thank goodness the nurse was sweet and helped clean him up (an entire pack of wipes - no lie), rinsed out his clothes and put them in a plastic bag to go! I knew I had a onesie in his diaper bag, but little did I know it was entirely too small. I was super sad that our new doc. was going to have to meet Luke looking like this..seriously who would dress there baby in a cheapy short sleeved onesie (it was cold outside) that barely snaps...it pulled down so far you could almost see his full chest. Oh well...there was no other option.

Dr. L was very prompt in seeing us. We had a nice long conversation about Luke's condition. Basically he made me feel a whole lot better about doing the scope. He said that TCH is one of the only hospitals that has neonatal scopes. They are super tiny. He seemed rather confident that he could do this procedure without blistering Luke and that he would not biopsy his insides. He said that out ENT doc. still wanted to be in the OR to take a look in Luke's airways since he would already be under anestethia. I left the appointment feeling a little more at peace with the decision to go ahead and scope Luke. THAT WAS FRIDAY... I don't feel that way anymore.

On Monday, our nurse Susie was babysitting Luke. She said that there was red blood in Luke's spit up. I texted our pedi. Dr. J telling him about the blood and asked if I should be concerned. He texted back saying no and that he would call soon. While waiting on Dr. J to call, the GI doc called. I ended up telling him about the spit up. Without any questions, he immediately said the blood was probably coming from an ulcer or blister. He seemed more aggressive in wanting to book the OR. He also said that he was not convinced Luke even had reflux! WHAT!? I SAW the reflux myself on the upper GI!!! LONG STORY short, when Dr. J called be back about the blood in the spit up, his first question was, "has Luke happened to have a cold?" ME: yes
Dr. J: have you been bulb suctioning a lot
ME: yes
Dr. J: oh I bet the blood is from doing that too much. It is probably coming from above his esophagus. Bright red blood would not be coming from his stomach.
ME: THANK YOU FOR ASKING THAT!
After talking with Dr. J about the GI doc ... we decided to get a second opinion from an older, more experienced GI at TCH. Dr. J reminded me that our one goal is for Luke to eat better and continue to gain weight. He doesn't think that doing the scope tomorrow or in a few months makes a difference. We all know it will have to be done...but I just want Luke to grow a little before putting him through all of that!

Friday night, Julie and Mandi GRACIOUSLY offered to babysit Luke and James Thomas so we could celebrate Lindsay's birthday! THANK YOU THANK YOU Mandi and Julie for taking time away from your own families to watch our little boys! We had a wonderful evening eating LOTS of food at Maggiano's! Happy Birthday Lindsay...I am so THANKFUL for you!
Saturday night we went to a Halloween party at the Chambers house! It was hosted by the Chambers and the Garretts. It was so fun to see all of the kiddos dressed in their costumes. Next year will be more fun for Luke...we can trick or treat!

One more update...Luke has gotten 2 new blisters on his toes, 2 new ones are forming on his fingers, and UNFORTUNATELY, there are 2 on his precious CHIN!. I have been so hopeful for no blisters on his face. I pray no more form near it!

I am so thankful for our precious baby! I still am praying for a miracle of complete healing...thanks for praying with us!